Category: Gender

I was very honored to present this essay yesterday as one of six personal accounts selected to be read at the AANE Spring 2017 Conference, which was titled Hiding in Plain Sight: Shining Light on Women with Asperger/Autism Profiles.

I have never fit in.

I’m not entirely sure I fit in here, at a conference about women on the autism spectrum. I’ve never fully identified as a woman, and I found out only a year and a half ago that I’m on the autism spectrum. So trying to tell my story as an autistic woman almost feels revisionist, even when I’m telling the absolute truth.

I grew up not knowing why I didn’t fit in. I was just too weird, my viewpoint and sense of humor incomprehensible. Academically, I was “too smart”; socially, I was mocked for my naiveté, teased for my way of speaking, bullied for my shyness. I was seen as a girl, but I didn’t think like the other girls. As a teenager, martial arts classes gave me confidence, but I still felt out of place. In the classroom, I could hear every fidgeting student, every scrape of chairs on linoleum, the high-pitched whine of every piece of old equipment — but I was able to get past all that if I kept my head down and studied. I loved to learn, and I did well, graduating at the top of my class.

My love of science carried me to MIT to study physics, paid for by an Air Force ROTC scholarship. For a few short weeks I felt I belonged; here was a place where science was cool, people worked hard, and geeky jokes were appreciated. But it was hard, and it wasn’t long before I felt overwhelmed and alienated again. It wasn’t just the academics that were hard; it was also the social stress of living surrounded by other people, the extensive planning and prepping to keep executive functioning on track, the frequent sensory overload. Somehow I made it through, but I graduated feeling wrung out, bitter, and undeserving of my degree.

Thanks to the Air Force, I had a job for at least the next four years. I got to do some technical work and learn new skills — and at least in the military, expectations are usually made explicit, social interactions are fairly regimented, and you always know what you’re expected to wear. Not being traditionally “feminine” is not unusual for a woman in the military, either. There is a lot of uncertainty, however, in knowing you have so little control over your own career, or even your own life: even in those (relatively) peaceful years, I could not say where I would be stationed next.

So I opted to leave when the four years were up. I moved back to the Boston area, got a job at a tech company, got married and bought a house. It was a lot of change over a short period of time, but I was making my own choices. I had friends. I earned my black belt and began teaching at and even helping to run the martial arts studio I attended. It was a busy four years leading up to my thirtieth birthday, during which — first slowly, then more rapidly — I began to hit a wall.

Some people call it autistic burnout: the point at which all the energy and effort you’ve put into keeping it together, managing executive functioning and sensory overload…just runs out. I couldn’t do it anymore. Full-time work, martial arts training and teaching, keeping the house clean, making time for my husband — I just couldn’t do it.

Perhaps unsurprisingly, my first marriage fell apart around this time. My lack of specific gender had always been with me; among other things, it led to close friendships with men as well as women, and to the certain knowledge that I did not want children. These were things my husband knew about me from the start, but they ended up as deal breakers anyway. Looking back, I’m sure my burnout played a role, too, as well as my persistent inability to explain how I was feeling, or to understand his arguments when I found them irrational.

All this time, I still didn’t know I was autistic. I just thought I was a failure, despite all I had accomplished. I held onto my tech job for another year or two, dropping down to part time and hating it more and more. During this time, however, I also grew close to a friend from the martial arts studio, and eventually we decided to move to a rural area and start over on our own terms.

That was twelve years ago. He and I are married now, and live in a beautiful house in the woods. We have struggled for money at times, but did so because we prioritized creativity and happiness over working long hours for other people. When I learned, at the age of 43, that I am autistic, I was overjoyed. Suddenly everything made sense. I started to see my life as a series of triumphs over struggle, rather than a lifelong failure to be “normal.”

I now work part-time — from home! — for a software testing company that seeks to employ people on the spectrum. This leaves time for several creative pursuits and areas of independent study. I still struggle with anxiety and depression, but as I learn to be my authentic, autistic self, I find new ways to manage that. While I didn’t know it for most of my life, autism has helped make me who I am. I wouldn’t want to be anyone else.

A lot has been written lately about autism presenting differently in males and females, and how this leads to more boys being identified earlier, while girls often go unnoticed until they are women. Some of this writing has been very helpful, and it has led to a number of us recognizing ourselves and seeking confirmation, instead of getting caught up in stereotypes based on one slice of the population.

But I also sometimes find it odd to read about autism in terms of gender. It gets me thinking of those other articles I’ve read that say Autistics are 7 times more likely to be gender non-conforming in some way. So I think there are probably a lot of us who cross those lines between a “male” and a “female” presentation of autism.

I also think there are two ways of looking at this issue. First is the idea that gender-based stereotypes of “autistic” behavior have guided the diagnostic process — clinicians are looking for traits identified in young white males of a certain socio-economic status, so they miss other traits that don’t fit what they’re looking for. This is the narrative in a number of articles I’ve read; they discuss the ways in which women and girls go unnoticed because of gender-based assumptions of what autism looks like in boys.

I think this definitely happens. But the other way of looking at it is that society’s gender-based assumptions also shape how autism manifests in boys and girls growing up.

A personal tangent for context: I’ve never felt particularly female. I didn’t feel like I was supposed to be male, either. Sometimes I’ve felt like both, sometimes I’ve felt like neither. But I’ve always found it jarring when I realized someone was seeing me as female, and only female, and responding to me differently than if I were “just a person.”

Because that’s how it made me feel, sometimes; I was just being a person, and suddenly someone else was calling me a “girl.” I encountered this time and time again, especially when I was in predominantly male environments, such as martial arts classes, the physics department in college, and when I served in the US Air Force. I would be going along, doing my thing, when I’d realize I wasn’t just part of the group like everyone else: I was “the girl.”

On the flip side, I’ve never felt entirely comfortable in all-female spaces that were specifically set up as all-female spaces. (If a group just happens to consist of all women, that feels fine to me.) I don’t have a problem with women-only spaces existing, and I understand why some women prefer them — I just never feel at home in them. I don’t feel a strong connection with the idea of being female, so if a space is set up with the idea that there is a bond between us because of our femaleness, I’m not going to feel like I fit in.

(I am curious about the experience of being in an all-female, all-autistic environment, though. There’s a women’s support group in my area that I have yet to be able to attend, but I plan to check it out sometime.)

But whether or not I feel female, society sees me as female. I was seen as a girl growing up, and socialized as a girl; that socialization shaped my outward behavior, and thus changed the presentation of my autism.

While a quiet, painfully shy boy may raise questions, quiet, shy girls are desirable. They’re cute. And not only does society see this as normal, it shapes girls to be quiet and accommodating. People talk about the “masks” that Autistic women have learned to wear, and how that mask lets us “slip under the radar” undetected until (perhaps) later in life when the mask starts to break down. But we need to talk as well about the societal pressures that shaped that mask — the pressure to conform, to be social, to be “nice.”

Some of us never cared about that, I know. But a lot of us, tired of being ostracized, did our best to learn “the rules.” And “the rules” are highly gendered.

(That means there are also strong societal pressures on boys and men, especially around a certain presentation of “masculinity.” I haven’t experienced those pressures, though, so I’m not really talking about them here — but I do know that they exist.)

So if social pressure wanted me to be quiet and accommodating, what happened when I needed something — quiet time, dimmer lights, different food — to help me cope? I kept it to myself and pushed on. Speaking up for what I needed was discouraged, was seen as intrusive or presumptuous, so I didn’t. And what happened when I got overloaded enough for a meltdown? That meltdown turned inward. I didn’t explode and lash out, I buried it in silent rage that eventually turned into depression.

Interestingly, a lot of my life was actually shaped by resistance to those gender rules and expectations, too; when society insisted that girls were not good at math and science, and I was, I took that as a point of pride and pursued those fields harder. When I was the only girl in my high school computer science class (this was the 80’s, kids, and it was very new) or the only girl in AP Physics, it pushed me harder to represent “my” gender well, even though I didn’t always feel like a full member of it. This was not necessarily a good thing, as I learned in college when I realized physics was not at all the career I wanted — but it represents another way in which I was shaped by gendered expectations in my childhood.

So what would you have seen when you looked at me then? A quiet girl, excelling in school and rarely asking for anything. Inside I was only half a girl, not knowing what to ask for, confused by everything and constantly misunderstood. Was I “masking” my autism, or just responding to every signal I could pick up and interpret?

The funny thing is, I actually just remembered an incident in which an early elementary school teacher (maybe 2nd grade) told my parents that she thought I was too quiet. My parents scoffed. I was in a class filled with some of the most rowdy, rambunctious kids that my school had ever seen (seriously, they changed class trip schedules because my grade would be too much of a handful) and they thought I was a problem because I was quiet? I agreed with them at the time; I wasn’t a problem, I was one of the “good” kids.